Grief takes many forms.

A few weeks ago, I watched Julianne Moore’s Oscar winning performance in Still Alice with tears in my eyes. As I’ve shared before in this blog, my mother has Lewy Body dementia (LBD), a cruel combination of Alzheimer’s and Parkinson’s diseases.

Mom and I at the beach last summer before her symptoms began to worsen.

Of course, all of these diseases are awful; however, although Alzheimer’s affects the mind and fine motor skills can be lost, it is more well known for causing mental losses. Parkinson’s affects the body, but people typically remain sharp as a tack. The twist with LBD is that it begins destroying a person both mentally and physically.

Recently, we watched Free Willy with my Mom and the grandkids. Of course, this is a cute movie that adults can enjoy; however, I’ve noticed that lately my mother prefers kid’s movies and old children’s TV shows like Full House.

She can hardly walk, but will practically run toward a piece of cake, relishing it with as much enthusiasm as a small child. My Mom now needs help getting dressed and showering. When she wants something, she wants it NOW. And sadly, she is losing some of her bodily functions.

In some ways, my Mom is like a kid, but in other ways she is clearly not, which makes things tricky. As a full-time caretaker, I have to constantly remind myself to treat her with the respect and dignity that she deserves.

We’ve always been extremely close, so at the same time, I am mourning the loss of the mother I knew and trying to accept and love the person she has become. We were best friends and I was dependent on her for advice and support; now I must adjust to her being totally dependent on me.

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

People with LBD have symptoms that swing wildly from day to day. She has her good days when she doesn’t shuffle as much, can hold her head a bit higher, and is more alert. Sometimes she’ll go days without any hallucinations. For a brief moment of denial, I can pretend she will get better.

In fact, this is a belief and statement my Mom often makes. “When I get better…” she says, which always gives me a pang of distress because I know it isn’t true.

And in my dreams, Mom is her former self, head lifted high, walking normally, standing straight, with no tremors, hallucinations, or confusion.

But then I am hit with reality.

One morning my Mom asked me if I was a Jehovah’s Witness like her. I said, yes, I’m your daughter, Julie, and you know that I am a Jehovah’s Witness. Oh yeah, she said and kind of giggled. A half hour later, she asked if I like sailing. I said, yes, you know I love sailing, I am your daughter, Julie. Oh yeah, I know that, she said. A few moments later she asked who my mother was. Trying to have a sense of humor, I said her name. She looked confused and I felt bad. You are my mother, Mom. I am your daughter, Julie.

She often starts sentences with, “My Julie….” and tells me about something I’ve done in the past as if explaining an incident to a stranger.

There are days when my Mom thinks a bear is in the laundry room, a tiger is swimming in the pool, or baby lions are squirming in the bottom of her bed.

She has lost her sense of balance and absolutely refuses to use a wheelchair and sometimes forgets to use her walker, so inevitably there are days when she falls. I must call my husband or brother to come home to help me because I am unable to lift her off the floor by myself.

Fortunately, these things don’t happen often right now, but they happen.

We try to laugh at these moments, but painfully, deep down in my soul, I know I have been given a glimpse into the future. That the day will arrive when she won’t recognize me and even though I explain who I am, she won’t understand like she does now.

As I said, grief takes many forms and it isn’t just for mourning someone who has died.

Of course, grief isn’t the only emotion I feel during these challenging years.

My feelings range wildly from a yearning for the mother I once knew and loved, to anger and frustration with the inevitable progress of this disease, to helplessness as I watch symptoms worsen with time, to guilt when I lose my patience, to fear that she will take a bad fall and truly hurt herself, to a deep and profound sadness.

I also grieve for the freedom I once knew. Although other family members give me regular breaks, I no longer can leave the house without calling a “babysitter” and often feel trapped. Fortunately, I can work from home, but writing takes concentration and the constant interruptions are frustrating to say the least.

Sometimes I feel downright resentful. Sometimes me and Mom bicker all day over stupid stuff.

Not pretty, but there it is.

These are all normal emotions and I know that I’m not alone. That’s why I like to write periodically about caregiving for all of you who are going through a similar situation.

Statistics show that nearly 10 million adult children, ages 50 and older, are caring for aging parents. So if you are in my shoes, what can you do? How can you retain your joy – and sanity – during one of the most challenging times in your life?

There are some great tips on the The Alzheimer’s Society’s website to hopefully help all of you who are caring for a parent or someone suffering with dementia. Here are a couple of their tips along with a few from a previous blog I wrote:

• Don’t bottle up your emotions. Express your feelings to someone who will listen and empathize with you to provide a release. That person could be a spouse, good friend, family member, professional, spiritual adviser or a support group. If you are a spiritual person, prayer is invaluable.
• Take care of yourself physically and emotionally. Get enough sleep, eat healthy, exercise. If you become exhausted, you’re more likely to get sick yourself and lose your ability to be an efficient and effective caretaker.
• As I’ve learned the hard way, watch for warning signs such as mounting frustration and out of control emotions. This may be difficult, but that means you MUST schedule time for relaxation. By doing so, you’ll be in better condition, both emotionally and physically, to take care of your loved one. Nurturing your own body and spirit gives you the strength and endurance to continue.
• Try to make time for yourself each day. Boomers are often juggling caregiving with demanding jobs and caring for their own families. Do not sacrifice your sanity for the sake of caregiving. Delegate, ask family members or friends for help, or consider hiring professional help.
• Try to focus on the positive. Enjoy things that you and the person with dementia can still do together or talk about interests you still share. Remember, if caregiving is hard, it is also a labor of love. It is a chance to connect with a parent and pay them back for all those sleepless nights you cried incessantly and inconsolably and they comforted you.

Along my journey, I am trying to put all these tips into practice.

If you are in a similar situation, I’d encourage you to acknowledge all of your feelings – good and bad. Try writing and releasing your feelings like I just did in this blog.

Lean hard on God, family, and friends. Ask for help as needed. Focus on the positive things in your life and appreciate the small moments of joy you have each day. And as suggested in the above tips, be sure and take care of yourself spiritually, physically, and mentally.

For more information on caring for a parent with dementia, see my three part series: Caring for Parents with Alzheimer’s or Dementia, Part One, Part Two, and Part Three.